It feels like forever since i last posted, in reality it has probably only been a week or so. Never the less i am back, my absence was due to Frankie, as you may have gathered. It would seem all wasn't ok after we left hospital, typical really, he was completely fine the evening after his botox, but several days after Frankie started to get poorly, since then he just hasn't returned to his normal self. I feel like he starts getting there, then we take three steps back. It seems everything has been put on hold this past week or so. The only thing i have had time for is sick, poop and a grumpy little boy.
We did attempt to take Frankie to an appointment he had this week, to get his feet measured for his new boots so he could get back into his standing frame. But it would seem he just wasn't ready, ending with him vomiting on the journey there, all over himself, his car seat, the feeding pump, the suction machine and the car!! This boy does nothing by halves. So leaving us no choice we headed home, and missed the appointment. I can imagine they shall be quite annoyed Frankie "wasted an appointment" but what did they expect, for me to arrive with Frankie soaking in his own sick, to then go back to my car that would have stunk to put him back in a sicky car seat, i think not. Some professionals will never understand.
Luckily Frankies physio lesson today went better, it was at home, that could have been why. He co operated with the stretches, which have become quite intense and uncomfortable since the botox. They say it will help the botox last longer, so if that means not having to put him to sleep and stick needles in him so often, then i am happy with that. Its often quite uncomfortable with physio's, you want to let them do their job and not get in their way, but they want you to watch them do what you do every day yourself. Awkward. Brady is the physio and massage expert though, so i think Frankie is secretly pleased when his physio's leave and he gets his Daddy back.
Frankie has a follow up appointment Thursday at Peterborough Hospital regarding his botox, so here is to hoping all is well and they are pleased. Then Friday the busy boy is to look at a new car seat, this i am sceptical about. Its hard to accept that Frankie will always need to be in a car seat or wheel chair in the car, this is most certainly not made easier by the sight of them! This particular car seat they think is suitable for his needs is named the "Carrot" car seat, with the hefty price tag starting at around £700 you would have thought they would of at least made them look nice, but having seen this one on the internet already, they haven't. All i see is 'a carrot' I shall defiantly be looking at getting this covered in some Toy Story material :-) or maybe Batman if Brady has anything to do with it.
Will peace come at the weekend? I doubt it. Buy hey, we got through another week and thats the main thing.
This week has become a bit of an eye opener to me, it has been one of the hardest weeks since Frankie was born and after reaching out for help i have learnt who the people are i can truly rely on and understand how hard Brady and I work with Frankie and the others than put themselves first and don't care that we were suffering and in need of a helping hand. This wont be forgotten. So thank you for showing your true colours and to the one and only person that helped, i can't thank you enough. You know who you are.
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